Man whose brain tumour went undetected for eight years – even after doctor checks – reveals the key warning signs YOU need to know

By Liam On Dec 13, 2023

A man whose brain tumor went unnoticed for eight years has revealed the key warning signs to look out for based on his experience.

Matt Carpenter, author of A Trip Down the Rabbit Hole: My 10 Year Journey with a Brain Tumor, cited several red flags that should have prompted him to return to the doctor in the years after his tumor was revealed on a CT scan in 2010. missed.

In January 2018, Mr Carpenter was finally told he had a low-grade glioma on the brain – the size of a Cadbury's Creme Egg – which required urgent surgery.

Looking back, he acknowledged that he was too willing to attribute his symptoms to things like high stress and strain, even though he didn't experience some of the most well-known symptoms.

“It's safe to say I can probably tell you some of the signs and symptoms of a brain tumor,” he said in a speech. TikTok.

Matt Carpenter (pictured) listed several warning signs that should have prompted him to return to the doctor after his brain tumor was initially missed during a CT scan in 2010

Mr Carpenter showed scans of his brain in 2010 (left), when the tumor was missed, and in 2018 (right), when the diagnosis was finally made

Curiously, Mr Carpenter began to reveal: 'In the eight years that my brain tumor went unnoticed – obviously bigger and bigger and bigger – I never had a headache, even with a hangover.'

Headaches are at the top NHS' list of brain tumor symptoms, which makes it more understandable that Mr. Carpenter was reluctant to get tested despite some of his other symptoms.

NHS brain tumor symptoms

Brain tumors can affect people of any age, including children, although they are more common in older adults.

More than 12,000 people in the UK are diagnosed with a primary brain tumor every year, of which around half are cancer. Many others are diagnosed with a secondary brain tumor.

The symptoms of a brain tumor vary depending on the exact part of the brain affected, but common symptoms include:

Headache
Seizures (seizures)
Persistently feeling sick (nausea), being sick (vomiting) and drowsiness
Mental or behavioral changes, such as memory problems or personality changes
Progressive weakness or paralysis on one side of the body
Vision or speech problems

Sometimes you may have no symptoms at first, or they may develop very slowly over time.

See a doctor if you have these types of symptoms, especially if you have a headache that feels different from the type of headache you usually get, or if the headache gets worse.

If your GP cannot identify a more likely cause of your symptoms, he or she may refer you to a doctor who specializes in the brain and nervous system (neurologist) for further testing and examination, such as a brain scan.

He added that blurred vision was another symptom he had never experienced.

But the two-time brain tumor survivor added that it still took him two or three years to even experience symptoms after the missed opportunity in 2010.

“My brain tumor didn't really give me any symptoms that I could notice until 2012-2013,” he explained, “and that got in the way of my speech being funny.

“Occasionally I would slur my words – when I'm sober – I would forget how to say certain words or forget what I was saying mid-sentence.”

Like problems with vision, problems with speech are a relatively common sign of a brain tumor, but Mr Carpenter said he would just overlook it and think, 'I need to see a speech therapist.'

It took a few more years before he got his next red flag: a change in mental health and emotionality.

“My emotional responses and mental health were pretty skewed,” he said.

But he said this could also be explained differently by working in a 'high-pressure environment' with the Hull Homeless Community Project doing '70 – 80 hours a week'.

“The biggest red flag,” said Mr Carpenter, “which should have been noticed – even by me – only started in 2017, so almost a year before the diagnosis.

“The first time happened when I was on my way to America.”

He explained that he sat next to an Irish couple during the flight before falling asleep.

When he woke up, he describes “making a bizarre noise, drooling, but not being able to move and having trouble breathing.”

He added: “I looked at the Irish couple and the faces said it all. They looked terrified.”

The episode was dismissed as a bad dream at the time, but Mr Carpenter continued to endure similar experiences for months until his diagnosis in the new year.

'It turned out not to be sleep paralysis, as I kept telling myself. I had severe seizures, but the seizures only happened when I was tired or stressed, so I had quite a few.

“But then again, I kept making excuses.”

The final straw came when one of these attacks occurred during a work meeting, leaving him feeling like he was having a stroke, with Mr Carpenter eventually diagnosed after seeing medical professionals.

Despite his tumor being initially missed, he clarified, “The best advice I can give to anyone concerned about their body: if something doesn't feel right, just talk to your doctor.”

'We have the NHS, use it. If you think something isn't quite right, ask. I should have asked a lot sooner than I did, and look where it got me.”

After being diagnosed in January 2018, his tumor was removed two months later, which brought a whole new ordeal of having to stay awake while under the knife.

He said that year: 'The part of my brain where the tumor was controls the movement of the left side of my body, so after the operation I couldn't really move that side.

'For the first few days I thought it would be permanent.

'It's been quite a stressful time. I walked in thinking it would be no big deal that I was going to have brain surgery, but I was pretty naive about it.”

After being diagnosed in January 2018, his tumor was removed two months later, which brought a whole new ordeal of having to stay awake while under the knife.

In a separate video, Mr Carpenter revealed that his recovery in hospital took about a week after his surgery, during which he was told he would not be able to return to work in the near future.

However, he boasted that three months later he was able to return to work – full-time night shifts at a homeless hostel.

Additionally, just a month later, he completed Tough Mudder – an endurance event consisting of a 10- to 12-mile obstacle course – twice on consecutive days.

“It was a big blow to my brain tumor,” Mr. Carpenter said.

Ultimately, however, he needed a second brain tumor to be treated – this time through radiation and chemotherapy.

He explained that as a result of everything he's been through, in addition to scoliosis and diabetes, “I'm sick, so technically I don't have to look for work, but I'm bored, I want to do something with my life.”

And outside of work, Mr. Carpenter continues his physical pursuits with an eight-day trek to Mount Kilimanjaro, Africa's highest mountain, for charity.

He aims to complete the mission in April and has a GoFundMe in support of MacMillan, The Brain Tumor Charity and PAUL For Brain Recovery.